post-scoop, or bringing back the dairy at BCH

Many thanks to those of you who emailed me with your thoughts - and wishes - regarding the Eldest's reintroduction to dairy. (cheese-cheese-cheesegimmecheese-ooh, ice creeeeeeeeeeeeeeamcheese) Yes, other tolerizing efforts are going on around the nation, and yes, right here in MA.

At Boston Children's Hospital, in fact. We were not part of this study, but you can read - or watch! more about the BCH clinical trial here, or watch Dr. Lynda Schneider explain it:

We're familiar with Dr. Schneider as the doc who didn't laugh during one of the Eldest's food challenges. The kid, tired of being asked to yank up his shirt every quarter-hour (to check for hives), decorated himself. In green marker. He put one dot over a middling high rib, another on the matching rib, a line downwards, and a flat, curving line just below the belly button. It looked roughly like this:   :-) His nurse was nearly 8 months pregnant, and laughed herself silly. It was a whole lotta laughter - but Dr. Schneider, alas, didn't find it infectious. And yet, listening to her in this video, you can see that even if she doesn't get the Eldest's sense of humor, she does understand something about what food allergies can do to a family. Good for you, Dr. Schneider!

For more of this series, you can watch Robyn Nasuti demonstrate the impact of a food allergic kid (or two) on the family food budget.  I was struck by Robyn Nasuti's willingness to cook multiple meals for her children. It's not an effort that I could sustain. The amount of time involved in preparing this individualized menu must be enormous, and how one maintains an identity outside of Allergy Mom - or a life outside of the kitchen? is beyond me. But different families make different choices, based on their different needs. Looking at the Nasutis' list of allergens, it's clear that their choices serve to keep their family going. And if three different dinners works to do that? well, then, three dinners it is.

In another clip, Ming Tsai, chef and father of an allergic child, talk about his efforts to educate others, and life with his allergic son. Tsai is wry, pragmatic, and I admire his ability to make things happen. The legislature that he helped craft - and see into law - offers a very basic education to folks working in restaurants. And, if you are wondering if that education is needed, I suggest watching the following clip about Brett's own efforts to educate his peers. The children's misunderstandings of food allergy - that the big 8 are "all of the allergies"   are common. Adults share these misunderstandings, and frankly, adults worry me more than the kids. Because, as we all learned from the parents of Edgewater, where the adults lead, kids follow.

Which makes us, some days, a living, mobile exhibit in the Things That Don't Happen museum. I told my wife that this allergy thing isn't really true, a lovely preschool dad - and educator - confided. Our son is lactose intolerant, but it's just not a big deal! So why are all of these people getting so upset about food allergies? He grinned and shrugged. I shrugged back, and arranged my face into something as far from wtf as possible.

Yeah, I nodded sagely. Never saw anything like this allergy stuff when I was a kid. Maybe someone had hayfever, but that was it. And now? I flung my hands up, EpiPens everywhere! We offered each other resigned, wry expressions.  If I hadn't seen the kids have the anaphylactic reactions, I said ruefully, and paused. Shook my head. I'd never have believed it.  

His head whipped around. Really? The anaphylaxis? I nodded, remembering.

Yeah. Never seen anything like it before it happened the first time, but it's pretty nasty. The kid starts to cough, vomit, then he's wheezing and his throat is closing. It's pretty bad.  So, yeah - I understand why parents get scared. It's a nasty thing, and it's easy to overprotect because it's so scary.


He blinked. You know, he said slowly, you are totally ruining my world view. 


I grinned.  I've heard that before. But if it helps? Lactose intolerance isn't an allergy. It's a missing enzyme that the body needs to break down the dairy. 

He flung up his hands, possibly in relief. Well! At least there's that. And trotted off to tell his wife.

backpedalling and scornful hindsight

In Florida, a school is backpedalling. Edgewater Elementary has reconsidered the 504 plan put in place to protect a first grade child with preanut allergy. This is hailed as a triumph by the protesters, one of whom said that the school is now trying to work with us. That's what we wanted all along. Experts have pointed out that some elements of the plan are unusual (and potentially unnecessary) and Gina Clowes twittered, accurately, that Allergy Moms should never cry wolf! We need to ask for what our children need to stay safe and included and not more. (3/28)

(deep breath)

Let's start here: sanity and a functional partnership between the food allergy (FA) parents, their medical team and a school is absolutely necessary. When a parent sits down to work out a 504 plan, they are the conduit between the doctor and the school. They relay what they understand of their child's medical needs - and many are the studies that show how flawed that understanding can be.  To balance any unintentional bias or misunderstanding, the parent supplies paperwork, a food allergy action plan, contact information for the allergist. They talk about the child's history, what has happened and what it looks like. They learn a little about the school's perspective, how things work there (nurse? no nurse? where are the Epis kept? what happens in the lunch rooms? how often do you have food fights?) and tries, politely, to figure out how much the school understands about allergies. 

Don't fool yourself into thinking that this is enough. The school comes with fears of litigation, regulations galore, staff who might be anxious or resistant or just insisting on a degree of precision in their instructions. The FA  parents come with their understandings, their misunderstandings and a fearful, hopeful please, please do right by my kid! And everyone hopes that the diagnosing doctor has got it right. It's painful to read about the unevenness in the ways that allergies are diagnosed, categorized - and therefore, managed - and the education provided to patients' and their families. Best care practices? For folks who don't go to a select few clinics, best practices means whatever their allergist - or pediatrician - tells them. 

And yet, Gina is right. Don't cry wolf. As the advocate mom, you absolutely, positively must have some authority. People need a reason to believe you when you say, this is what my child needs to be safe. To coexist in a world of her peers. Because - and I did ask - the allergist isn't going to be able to show up and say that for you. (Note the waiting lists for appointments and food challenges. That's why. Our hemophilia treatments center can send a nurse practitioner *and* a social worker, but hemophilia? rare. Allergies? really, really not.) So, parents? Don't screw it up.

Hello? Have we not read the articles about false positives on the allergy tests? Did we not read about how some egg allergic kids can tolerate eggs in this format, and others can handle their allergens in that? Um. So, if the doctors aren't able to keep up - and are making mistakes - and don't get me started on patient/family education, how is the parent supposed to avoid screwing up? 

I'm going back to what I said earlier: if you weren't in the room for that 504 plan, you just don't know what happened. And, as Dr. Scott Sicherer pointed out, if you aren't the child's doctor, you just don't know what she needs. Maybe the school asked for the peanut sniffing dog, to help them make sure that they knew where those pesky peanuts were hiding. Maybe someone pointed out how oral kids are in the younger grades, and that they put things in their mouth. What if some peanut stuff got on a pencil - and the allergic kid picked it up? Fear of litigation, a desire for a margin of safety, an honest wish to do right - and yes, misinformation of the most well-meant kind - these are all reasons that a school plan might edge towards the conservative. Possibly tip over the edge, towards aggressive. Litigation is a silent demon in the room, as is the honest, compassionate worry about not doing right by a child. By one of your kids, a kid in your classroom. It's just so much easier to walk away - which is why we needed ADA and IDEA; sometimes you have to force the system to do the right thing, despite the risks. To learn how to do the right thing. Public schools have learned, but they are still - and rightfully - anxious.

I can live with the good reasons - the well meant ones. I want to wail about the lousy education that most of us get, and oh, I could tell you stories about positive allergy tests that were positive - maybe. Or positive until the kid's IgE dropped, maybe once the pollen season was over. Or positive only because we weren't yet working with the fancy shmancy allergy clinic that saved us, and the other allergy team just didn't know enough.  And I want to take out a billboard and say: that kid can't trust her classmates, because their parents are teaching how to lash out in the name of your pseudo-rights. The kid's parents can't be effective advocates, because the big experts have gone on national TV to show how wrong they are. And that school has now taught the protesting, self-centered people that oh, a plan designed to keep a child safe? Negotiable.

Safety, accurately described and understood, is not negotiable. Clearly, that accuracy is just not possible here. The experts were right to say what they did, the school was right to rework the plan. The parents were right to ask for more information - but the poison is in their picket line. In keeping the non-allergic children home from school, as a form of protest. In putting those children on the picket line. Because ultimately? it takes more than a 504 to include a special needs kid, you need to have school, family and community working together. And after these events, I cannot see how this is a school community that will show the necessary compassion, or respect this issue in the future. And I cannot see how the FA parents were anything but set up.

And I worry deeply about that child. She won't just be different in a world of her peers, and she hasn't been allowed to be merely different in a world of different needs and different children. Instead, she'll be herself, complete with her medical needs -  and those needs, or difference will be mocked, used against her - if not simply and dangerously dismissed by her classmates and their parents.

And in that, there is no safety at all.

**************************
For more on the story, see this thoughtful bit of reporting, which talks about the medical need and missed opportunities to teach compassion. Kudos to the NBC team for a balanced report - and hat tip to the Allergy Mom Supreme, Gina Clowes, for the link. For a (self-declared, though anonymous) parent's perspective, try this.

toxic information: warning, may not be extractable from brain

Some days, it's just not worth it. You can do everything right - get an allergist to work with you, talk to your kid's school about a 504 plan, have them talk to your kid's doctors, and even buy a cute backpack for your kid to take to school.

Oh, and offer to pick up treats for a school party, because hey, your child might have allergies, but kids should get to celebrate, right? And when you can set it up so that everyone celebrates together, with allergy-friendly yumminess, well. You rock, mama.

It's just too bad that someone forgot to explain this to the other parents.

While I'm torn between an urge to march on down there and start lecturing - and an urge to screech - the truth is that I get it. Let's start with transparency: for the people outside of a process, especially a bureaucratic one, it's really really easy for the process to seem biased, sloppy or just plain wrong. Is the child really that allergic? I wasn't there in the 504 meeting, but a doctor was involved. Was the child correctly diagnosed? Not being an allergist, I'm really in no position to say. Are all of these measures necessary? Oh, goodness knows, but again: not an allergist. Still, in our experience, a small portion of the measures taken to protect our children come from anxiety, or a need for certainty and an extra margin of safeguards. A large percentage comes from medical need, as described to the parents. And there, folks, lies the grey area. Doctors hate questions like, 'is this safe?' because the wrong answer can leave them open to lawsuits. Parents hate undue risk because the wrong choice can mean any number of scary things. So. Schools take on liability, parents have taken on a whopping dose of fear - which means that the doctor's role here should be all the more reassuring, as s/he can provide perspective.

Nonetheless, in this poll, 71% of respondents were certain: the school was wrong. And trying to spring the unfairness on the parents. Why are we being kept in the DARK? read one protester's sign.

It makes me crazy to think about how tiny the opportunity is for lighting that darkness. Once folks apply sharpie to oaktag, the opportunity for reasonableness, or even for education is essentially over. When the school's spokeswoman talked about the 504 plan, the legal requirements and process that the school must undertake to accommodate a child, I don't think people were listening. "Rights" ring more purely than legislation. No wonder that Wrightslaw has such an intense section on advocacy, and how to do it. I've read it, practiced it - and still, my success as an advocate has always depended on who is listening. People who are open to information, flexible and willing to be partners? Love you all. People who have already decided what is true and what is needed? A trainwreck, aimed right at the kid.

"You can't take peanut butter and jelly, or any other right away from my child," a parent screeched. And her message echoes through the school hallways. In a less controversial class, classmates are protesting the limits set for a second peanut allergic child.  "They say, put me in another class," said the little boy. "So that they can eat peanut butter."

His face is bewildered, his mother nearly incoherent. Facing them are passionate, appalled parents, explaining that they don't want to be unfair - but that a child so allergic as to require accommodations affecting the class? Should just stay home.

It's unutterably sad. When did rights mean get out of my way, I want to live my life the way I want? When did this narrow indignation usurp generosity of spirit, or a sense of flexibility, possibility - or heck, kindness? If we could only back up the tape in Florida, I'd sit down with those parents, and say, hey. Let's try this: take a kid who has been shut up at home. A kid who has been inexpressibly lonely, and who would love to leave their bubble - but is probably scared. And let's say this to that kid:

And that's it. Instead of no, you say yes.  You say, we can instead of mine, or I won't. Maybe, wisely, the school says it first, and helps you figure out how. And then? Together, you take the kid who was shut out, whose school told him to go away, and then you open the door. Come on in, you say. Because it really is that easy.*  And then, you show him that you get it.

Maybe you are in preschool, and all you know about allergies is that they make you sick (see the rash?) and that sometimes bees are involved. Oh, and thermometers. That's plenty for a little kid, who doesn't really need the science - they just need the general concept, plus help in being a good friend.

Welcome to lunch, the little kids said, in their own, pre-literate ways. Please don't be that sad, sick kid. Be this kid, instead! 

(for a four year old, that's one seriously happy face. Plus kipa, fyi) Be this kid! Be laughing! Or, says another child, be this kid!

Hair, curling everywhere, arms as wide as the world, and a smile so wide that it's taking over the face - and needs an extra set of eyes to twinkle alongside it.

Welcome to lunch. We're so glad that you are here! they said, and the Toddles sat, proudly, at his special, decorated table. His table was pulled up against the other kids' table, and he sat so carefully. Shining with pleasure. Learning how to be a child - how to be That OMG Allergic child - living in a world without bubbles.

And laughing.
****************************
You can read the school's puzzled response in HuffPo (hint: ADA? not so familiar), an opinion piece (also, not so much with the ADA), this pithy response or this one. Or you could cut to the chase, and go straight to this call for everybody to just stop, and take a deep breath.

But I would rather that you thought about this: when people aren't educated about food allergies, this is one thing that can happen.  Death threats were made, and the child's parents chose not to keep her in the school. That's one outcome. And this, sadly, is another. An educated peer - an aware adult - someone could have asked the question, is this safe for you? And we'd have one teenager, sans coma.



* and if you are having trouble, there are wonderful resources out there, like this one: http://www.school-lunch-ideas.com/
**but you can laugh about it. Like in this cartoon.

okay, we got scooped

Well, sort of.

For those of you who read the New Yorker, there's an article in this week's magazine by the thoughtful and wise Jerome Groopman. "The Peanut Puzzle" is a calmly written alternative to the shrieking headlines offering fear, or skepticism. And wry apology.

In case anyone is wondering, the baked milk study mentioned in the article is yes, the one that the Eldest just finished. Oh - did I mention  that he finished it? He did. Two tries at the 6 month version of the protocol, a possible false positive at a food challenge (turns out the ewwww, of a coated throat from full-fat dairy? not easily distinguished from an ewwww of the stomach urp, plus general ickies for a kid expecting anaphylaxis to start. Any time now. Now? Now? Maybe now?).

Then done. Then not done - hahahaha - because you have to avoid all dairy for a month, just in case the allergy comes back.

What happens if it comes back? asked the Eldest. A borough away, the mama nodded. The kid's skin tests were still positive, dammit. So, what happens?

then you'll be the first, said the allergist, and the Man says that she offered a wry smile. And you know what? For once, the kid was not unique. But he also couldn't believe it. Still, he was cool. He knew the score - go, test, schlep home, eat more stuff.

bah, said the Eldest. Done this before.

And oh, he was cool. He was sly, working his moment, enjoying Diego's fries (made in a special fry-pan! special oil! and how on earth does he make them so good? The nurse shrugged. The kid ate his sixty-first, and grinned.)

Ooo, said the Eldest. A foooooooood chALLenge. Oh, that's scary.

He tossed back a slug of chocolate milk, then another, another, and oh - a bunch more. Easy peasy lemon squeezy, he informed us. And mugged, to prove it.

That's it, said the same, wry, lovely allergist. You are done! Thank you for helping us learn about what we can do to help other children like you, with their allergies.

The kid swept a grand bow. The allergist cocked an eyebrow, appreciated the gesture, and left.

You're done,  I told him. He paused.


No - really?

I nodded. He shrugged. I put a hand on his shoulder. No, really. Go ask her.

The Eldest caught up with Dr. Wry-and-Gracious by the elevators. I watched as he talked to her. She looked puzzled, but replied. He looked at her, searching her face. And then, turned and walked away.

He doesn't really believe that it's over, I explained. Watch. It's about to hit him. 

Two-thirds of the way down the hall, the kid stopped. Tilted his head, then froze. Now, I told her.  And we watched the kid gallop down the hall, laughing. 

let's take this allergy thing from the top

There's been a ton of press lately on the great allergy hoax. Or possibly, the great allergy inflation. And I don't think they mean angioedema - they mean a swelling of numbers. 1% of allergic Americans? 10%? 30% or more? Bah, I say. And bah, again.

If there were better tests and more clinical evidence for interpreting those tests, and if those tests were conducted and interpreted by specialists, we'd have lower percentages of allergic Americans. A better sense of the realities of food allergy, and a healthier respect for the needs of the allergic person. And, with all due respect, a pediatrician is not an allergist, and should not be dipping toes into (what the Boston Globe calls) the "Byzantine and endlessly frustrating" mess that is food allergy. Even when the allergy is clear, I'd still schlep my kids to an allergist for confirmation. And evaluation, in case there's something we missed, or misunderstood. But I'd schlep 'em with my pedi's script for EpiPens, filled and tucked into my bag.

And then watch the specialists thread their way through that mess, and hope like heck they can figure whateveritis out. After 6+ years of watching allergists think, scratch their heads and admit ignorance, yeah, I can see that it's hard. They just don't know, oh, nearly enough. And I adore each one who admits it. And appreciate the dickens out of each allergist who tried.

Oh, I am so very very much looking forward to talking to allergists armed with better data - the gap between our hotshot allergy team at Big Famous Clinic and that at the local children's hospital is, well, noticeable. And I'm really, really looking forward to the next generation of tests, like the one being produced by Christopher Love and Dale Umetsu: instead of measuring antibodies to the allergen, this test looks for cytokines, a protein released by white blood cells in response to an allergen.

Our situation, however, is pretty simple: by and large, we've watched our boys react to their allergens. Dairy? watched the hives, heard the throat thicken and swell, the voice roughen, the coughing start. Sesame? watched the coughing, the vomiting, the hives, the unrecognizably swelling face, and the hoarsened, struggling breathing. Zucchini? I kid you not, on a brand new gas grill, we watched the - well, see above. And none of those come close to the time that he turned blue, then grey from an antibiotic. And so on. But I'd never consider him typical.

What percentage of Americans have food allergies? As opposed to stress, stomach aches, IBS, FPIES or EE? I have no idea. I just know someone who does.

Folks, allow me to introduce you to an allergic kid:
But hey, just because I spun you a harsh little tale up there, don't let me sit on that and pretend that it's the full truth of our reality. Byzantine, remember? We've been slogging away, watching the kid's dairy allergy decline to be tolerized, heads down, feet plodding. But the BFA docs had been considering our test results, and matched them with an array of arcane, Imperfect data, and had a thought: our particular Byzantine maze might have taken a twist or two, and we hadn't noticed. You don't, really, unless the avoidance protocol slips.

Which is how, in the middle of a big hoo-ha* about the great Food Allergy Hoax, there we were.

Um, said the Eldest, nibbling around the edges of a cracker. I'm not actually eating peanut butter yet, am I?

I peered at the teeny smear of stuff in the center of the cracker. Nope.

He blinked.

Oh, what the heck, he said, and bit down.

Nurses hovering, the kid next to him panicking, he did it again. And again - seven times in all. He grinned and bravadoed his way through, pausing together with the panicked seat-mate, to listen to a wailing, sobbing child. I won't, she cried, I don't want to. Don't make me.

The Eldest looked at me soberly. She's not having an easy time of it, is she? I nodded. The allergist looked at us sympathetically. 30-50% of the children fail their food challenges, she said. Some days, they all pass. Some days, none of them. It can be hard to watch. The Eldest's eyes widened, and he dipped his head, understanding. It was, indeed, hard to watch.

Carefully not watching, he took another bite. Shoved the fear aside, and swallowed.

That night, he fell apart, and was still a mass of boy-fragments, come morning. But when the sky failed to fall, he allowed himself to reassemble into a mere variant of his former self.

Does it go in the fridge? the Man asked. I shrugged. Dunno. What does the label say?

Cautiously, we put it in the pantry. Stood back, and admired the view. I can't believe it, the Man grinned. Shhhhh, I told the Man, you'll scare it.

***************************************************

* see here for a variety of hoo-has. I've chosen from the more sensible, avoiding the shrilly triumphant ones with the torches and buckets of pitch.

• NYTimes meets NIH/NIAID (National Institute of Allergy and Infectious Diseases), re: allergy hoo-ha. Please note that the article indicates that food allergic reactions are carried out by IgE, or immunoglobulin (antibody) E. IgG, however, is also associated with an immune response to an allergen, as is noted by Victor Sierpina in the following:
• hoo-ha a la team of experts
• a polite hoo-ha of a review, from ScienceDaily
• a local boy makes good hoo-ha, a la Globe
• and a rather pithy hoo-ha from the UK, via India

Disappointed by the lack of shrieking, triumphant parents of peanut butter eaters? Try the comments section. And don't forget to bring your own torch, or at least a bag of feathers. A rail, maybe?

It's a confusing mess, and makes me oddly glad that my kids staked their claims to their allergies with hives, GI pain, diarrhea, and the odd closing throat. We've still got grey, foggy areas in our allergy profile, but that makes sense - like the science, the kid is also a slippery target. Grows, changes, quirks, repeats process.

So you won't find me waving torches in the comments sections - I'm too busy making peanut butter pasta to get involved. And shaking slightly, because it was hard to watch.

a random composite about light and eggs

While things sprout, irrespective of the ridiculous East Coast weather, my inbox has tossed sprout out the window, in favor of a galloping, galumphing grow. It overfloweth to an objectionable, four-digit degree, partly with routine ignorable emails (Family Fun in your area! Today's Science News Headlines!), and partly with emails that I really, really should answer. Some fun professional stuff, in a year when I'd pretty much resigned myself to not having a profession, some school stuff, some friend stuff, and a few, neglected, please get out your calendar emails.

(I'm hiding from those last, because I hate getting out my calendar - usually it laughs at me, and suggests two possible dates, roughly 2.6 months hence. Insert feeling-sorry-for-self bit here, followed by bracingly balanced bah, humbug.)

Trying to keep up, my emails are getting shorter and shorter. Here is today's, in response to a lovely human being who asked about egg replacement in a recipe for the Eldest's school.

********************

Re: egg replacement in gluten-free baking

1 egg:

1 tsp baking powder + 1.5 TB water + 1.5 TB oil

2 eggs:

1 tsp baking powder + 1.5 TB water + 1.5 TB oil

and

1.5 tsp Ener-G egg replacer + 2 TB water

3 eggs;

don't do it.

*****************

Got it? Good.

On the upside, however, I did check my blog email for the first time in roughly 7 months. So, if you sent me an email, I'm on the job - and I wish to apologize for having had the gall to ever set up the email account to begin with, given that I was then (inevitably) going to lose the scrap of paper with the password. Pesach cleaning bonus: found it!

But I put aside my war with the inbox(es) on Monday, long enough to appreciate the 45 minute commute to the Eldest's school, and the 1.25 hr commute home from it. Holy freakin' moly, but it rained small lagoons. Bad time to have waterfront property, people. Hell, bad time to have property without a water repellent force shield.

As it poured, the Toddles and I munched on a bit of sunshine in a mango peel. The kid scooped up most of the mango, then grinned so beautifully that I *ahem* completely missed his swiping of the last two pieces.

That was good, Mum! he informed me, sure that I hadn't been paying attention to the mango bonanza by my elbow. I looked, mournfully, at the empty plate. Mango-goateed, the kid grinned. Can I have a flashlight? I need to go and shine light in the darkness.

Outside, rain plummeted, the river rose and water spouted through manhole covers. I looked at mango boy. Um, sure. But I think you just did.

playing if x, then y...eventually

Fear not, Persephone: managing a food challenge is unbe-freakin-lievably slow. To prove it, I offer a conversation from November, 2009. Although honestly, all I need do is to point to the achingly slow process leading up to the maybe-it-will, maybe-it-won't work challenge.

Food allergies may be a frustratingly shifting target, but they can also be an achingly immovable one. The challenge is merely exemplary of this:

We've frozen the list, the woman at the local kid hospital told me.

Frozen? whazzat?

The backlog on the food challenges is so big, that we're not making appointments for new ones.

I nod. It takes an allergist per two kids doing challenges - and anyone who has tried booking an appointment for a regular clinic visit, knows them allergists are not exactly thick on the ground, or flush with spare time. The clinic must also supply a nurse, who will do the crucial work of making the challenge happen - and the dietician, who makes the specially measured and prepared food for the challenge. Periodically, this person is also the dietician who runs to the kosher butcher, to buy the kosher ground beef for a food challenge, and then calls you to make sure that she can use the same pans that she had bought especially for another kosher beef challenge (but they had a different symbol, she says and you nod, recognizing when you are out-frummed), and not used since. Plus a comfy room in a relaxed environment. Because if it was an un-comfy room, in a tense environment, a wise child might consider their surroundings, consider the appalling thing that they were being asked to do (go on, honey - I know I said this food would hurt you, but eat it anyway) and complain of feeling funny, an upset tummy, or some other, vaguely described symptom that would lead to getting the hockey puck out of there.

Kids are smart. But having had a taste of what allergy-less (allergy-free? bah, humbug) life might be, I'm impatient and, yes, greedy: I've had enough of slow, enough of being patient, and I. want. that. challenge. (stomps foot)

I change tactics, chatting for a bit about the logistics of the challenge, how wonderful it is that they offer such a facility, and is so and so still around? they have such a smooth, gentle touch with an IV...and did whatsername have her baby? I do want to know, but I am also ruthlessly manipulative here. But the alternative is to do the food challenge in a tiny closet of a room, with a freaking kid and a tense, too-busy staff. Oh yes, and months from now. Lose all 'round, I figure, and happily chatter about staff that I truly like, and memories that glow in my hands. Through the phone, I can hear the woman smile, appreciating that I'm not going to rain fire on her head for a situation that she did not create.

So could we stand on the end of the line? I don't mind waiting...

She offers us June, and we chat briefly about waiting lists. I wince. But I'm practical: the Geniuses in the other state, the other hospital, are having similar problems. And I won't risk a false negative - that can take a year or more to undo. So. Let's play "If X, then Y," shall we?

IF the bloodwork comes back with a low score for peanuts, for the Eldest, we have a food challenge. IF the bloodwork comes back with a low score for peanuts for the Toddles, we have two. Because a passed challenge means putting the food into the diet, and for some unavoidable logistical reasons, that means having it in the house. So, IF we have two and IF both boys pass their challenge, THEN we may have peanuts in the house. In the Imperfect house, allergy central, capital of the Land of Unlikely Allergic, tip of the arrow of Immunology Runs Amok Here.

On the other hand, having seen an anaphylactic reaction to zucchini, who am I to scorn? A passed food challenge to pumpkin, and a reaction to (oh, my that IS rare, said the junior Genius) pumpkin seeds - well, why should statistics and probabilities apply? Who better than us to be allergic to all of that, but not peanuts?

Improbable. Which is why I can brush it aside, more casual than skeptical. No, not skeptical - skeptical has an edge. And I have no edges here, I am all grace and calm. (Um, says a friend, who knew better. You sound like hell. And kindly let me splutter, then wail.) And so I say, airily, bah! Maybe we will have an IF. Maybe we'll have a THEN. And a something ever after to follow, but the IFs, the THENs, the inevitable, underlining maybes all dance on the edge of something, teetering between hope and skepticism. Grace declines to teeter, I'm guessing. Which is why grace is calm.

So, bah! Enough of possibilities and improbabilities: I have a birthday party to prepare. Starting with materials on this, because the Eldest, you know, has had a birthday. And he has a passion for a subject or three. And oddly enough, two of those has focussed on Hawaii.

But more on the birthday - and the passion(s) - later. For now: bah! And fear not, Persephone, we're not going anywhere. Quickly, anyway.

status: quo?

It takes some real gall to bitch about a situation that was, I admit it, perfectly fine as of oh, four days ago. No, wait - I understate - it takes some real greed to bitch about a situation that had me giggling in the supermarket aisles, six months ago.

I'm going to bitch anyway, but it's only fair to let you know that I'll also be mocking myself as I do. Possibly even laughing. Silently, so as not to interrupt the flow of the griping. And at some point, I'll be laughing too hard to keep up a serious run of bitch. But that's later.

Now.

When we last left this blog, the Eldest and I were muddling through OT-land, and weaving past fuzzy diagnoses as best we could, given the concerned parent trap clamped onto my foot. Fun, no? And then, in the midst of the muddling, bam! The non-twitter post. I know, I know and I apologize for the abrupt bam!ness of the post; the day bounced out from behind a stack of laundry and things to do, and there we were. So for those of you who are completely befuddled, here's the back story:

About six months ago, the Eldest was incredibly, ridiculously thoughtful and brave, and ate a bunch of dairy. Despite, mind you, still being allergic to it, and despite knowing that he'd stop eating, essentially, when he reacted to the stuff. This was all part of a clinical trial that is studying two questions: 1. can you be allergic to something, and still tolerate that food, if it's been heated? Heat can change the shape of a protein, and the body may be more tolerant of the protein in that altered shape. And 2., can regular doses of a tolerated form of the protein/allergen help a child lose the allergy? Reduce the severity of the allergy?

Boy, did we want to find out. And we did. You can read me musing and panicking about the trial here, see what happened on day one here, and day two here. Bottom line? We were ceilinged. The Eldest can handle some heated (very very very well heated) dairy. Preferably crispy. And he did, eating lots of crispy, non-drippy dairy for six months, with increasingly effective whines, groans and wails about the injustice of it all. Still, he hung in there, and Monday was going to be his triumphant return, after which he would be allowed to have any dairy he wanted, for one month. I'm going to have ice cream at my birthday party! he glowed, and I could not loosen his grip on that certainty. He ran off, and told all of his friends about his upcoming triumph. Maybe I can eat that, he told one kid, who was waving food at him.

And then he couldn't.

Later, comparing notes, the Man and I realized that his reaction to the boiled milk was unchanged from six months ago. We'd spent six months hoping and working, and apparently, standing still. The gain from the trial thus far? Discovering that the Eldest can eat brown, crunchy pizza, or rice pudding that's baked for 2.5 hours. A cookie with milk (but not butter) that's been baked until crisp. And that after four or so months of this bounty, the kid can make you regret any ideas you had of working up to cheesecake.

But hey: baked ziti! crisp pizza! rice pudding! bread pudding! cookies! graham sorta-crackers! When the allergy wall cracked open, we were giddy with the options. Not that we actually ate any of them - it took so bloody long to prepare the trial's prescribed foods that neither the Man nor I went dairy-crazy. And, as the months slushed past, the giddy dropped and we just wanted the prize: more. More, more, more. But we - okay, the kid - didn't get it. (internal toddler stomps foot and roars. internal adult looks on with a small smile, tempted to join in.) But please snort at our righteously indignant we wuz robbed whine - there's no real excuse for it. After all, we'd seen this pattern before, complete with Monday.

When the Eldest was maybe seven months old, I was worrying. Then researching, then arguing with the hematologists. By nine months, we all saw it: we gave the kid clotting meds, and he'd bleed at the spot where we'd infused.* Which, considering that we'd just put in something to make him not bleed, seemed kind of, oh, wrong. But the Eldest's body, not having consulted the wise grownfolk, had decided that these strange clotting proteins were too strange, and was making antibodies to them. Fighting the clotting meds off before the medicine could do anything dangerous. Full points to the body for being sensible, full points to the body for being absolutely ass-backwards. And yes, I bet you know where this is going.

We spent a frustrating year trying to tolerize the kid to his clotting meds, holding him in a (loving! I swear!) half-nelson while we infused. After twelve rather bloody months, we managed to wrestle his immune system into a teeth-gritted compromise. And spent an extra six months, trying to help cement that compromise into place. Today, he still makes antibodies to his clotting meds, but at a much lower level. Low enough that the meds work, high enough that he needs a more aggressive dosing regimen. But all in all: fine.

Allergies use a different kind of antibody than the type he produced for the clotting proteins, but the kid is the same. The determined, too-strong immune system, protecting him unnecessarily - and dangerously - is the same. Seriously? I haven't the faintest, blessed idea as to how we lost sight of that. So yeah, it was a glowing three weeks after the wall cracked. Me giggling in the dairy aisles. The kid thrilled, enthusiastic. And yep, the next four months had a fabulous view of the grindstone. And the last month or so had a pissed off kid doing the soundtrack, with a bass line of irritated, oh-come-ON-you're-so-close parent. That was six months. But it was also only six months. Or, to put it differently, it was six months in which dairy became mundane (in three specific forms, plus calipers), after six and a half years of allergy.

Never thought we'd get that.

So? Maybe history will repeat itself. Maybe it'll take another six months to wrestle the body into some sort of compromise. Maybe another six after that, to make sure that the stubborn, wriggly thing will keep that compromise. Maybe I can even persuade the kid of that, with some mixture of bribery (extra yumminess! sugar by the kilo!) and the perspective that would get him through. Maybe, it's worth it.

And maybe, in the midst of the bitching, I almost missed something crucial: today, both boys had their annual allergy clinic visit with the Allergy Geniuses. We had some fairly simple questions, and one big ooooh, maybe? The Toddles had skin-tested negative to rye recently, and made jaws drop all around. His bloodwork was pretty high last winter, said the junior Genius. Let's retest when you get here. We did a battery - a lacework - of allergy tests on the boys' arms.

The Toddles scored a big, fat hive on the rye test, with a constellation of other big, fat (yes, smug) hives.

While my internal adult joined the internal toddler - and out-roared her, thankyouverymuch - she nearly drowned out the Genius Jr's thoughtful hmmmm. (*****inserting pause to make sure that you pay very very close attention here*****) The Eldest had quietly scored a nearly-invisible mark for peas, limas, and wait - oh! oh! oh! - peanuts. Sensibly, the Toddles couldn't be bothered reacting to peanuts, and

hmmm, said the allergist. Depending on what the bloodwork shows, we may have a change in plans. How would you feel about a pair of peanut challenges?

Um. Well. Maybe - I suppose - oh, possibly we could be talked into it.

*infusion: the medication is given directly into the bloodstream.

six months later: a hope in three doses (updated 11.14 am)

(as before, this post will be updated as new information comes in.)

2.15 am: if I don't go to sleep, will tomorrow not come? Or are the sleep-deprived the only ones so silly as to think so? Tomorrow is today, anyway, and today is the day that the Eldest returns to the allergy clinic, and drinks milk. Straight up, people, down the hatch. And maybe, maybe, maybe, six months of eating this three to five times per week, that four to a grueling seven times per week, and oh, yum! those two to four times - maybe it will have worked.

Or not, and he'll have a reaction. But what if he doesn't? What if he's beaten the allergy? I'm teetering between hope and a deliberately squashing cynicism, but I'm pretty sure I know which one of the two is keeping me awake.

8.22 am: Just arrived, says the Man, and my breath catches. Okay, then. Here we go. He'll spend the next little while, I'm guessing, handing in the paperwork that charted the Eldest's every bit, sip and bathroom run for the past three days, the stack of recipes, package labels and yes, even wee jar of poop. The kid's gustatory history for the days before today will be scrutinized and detailed to a degree that astonishes me - what on earth could the clinicians hope to learn? And will they tell us?

After the skin testing, the weight, height, placing the IV (in case of reaction), etc, they'll give the Eldest three doses of boiled milk. It's the last hurdle in the trial, the kid having already passed the dairy muffin, the cheese pizza and the rice pudding challenges. If he can handle the milk, then the (dairy) world is his oyster: any and all that he wants, for one month. If not? We have no idea. But I am completely, 100% sure that I can drink the milk, the Eldest told us. And honestly, he was probably in a better position to know than we were.

8.42 am: You know, this time six months ago, I don't think I was having nearly this much fun. The Toddles, all striped pajamas and dont-cut-mah-hair-ma grins, is sitting in my lap and laughing with me over the irrepressible, wonderful Tiffany Ard. (He shares her opinion on desserts and quotation marks, by the way.) And we're arguing over the best place in the world - is it curled up in mama's arms? Under the warmest covers ever (in a coincidentally freezing room)? Or at the pool, where the Grandmere might possibly maybe take him - if, of course, he makes it out of pajamas?

The Toddles is considering the matter, he says. is america the best place to live i typed this, he muses. And yes, typed. See? Deep philosophical thinking happens best in pajamas.

He's brought six tissues to help us while we think, because we both have streaming colds. He's graciously given me three so far, and I have three! three! left, he says, delightedly. And we're killing time until the Man's next report....which is here!

8.58 am: Skin test: boiled milk virtually non-existant. Raw: smaller than hystamine! writes the Man, somewhat hystamine himself. And so am I. The histamine control tells us the baseline response to histamine i.e., how big the hives are), but the Eldest's response to dairy? His body can barely be bothered noticing it's there. Oh. My. The Eldest smiled and calmly wrote fuk and ass in Bananagram tiles, while the adults fluthered around him. Ask him if he can make "quotient," I wrote back. The Man sniffed. Already made "quarter" and "quail." The Toddles expresses his admiration by running around the kitchen, starkers.

9.45 am: Eldest says he has a scratchy throat, asked for basin. Will call in 3 minutes. When the Man calls, he tells me that maybe, the kid panicked, maybe not. The urge to vomit might have been from a sense of tradition, or a true reaction. Or the family virus. Who can tell? The Eldest, toppled from a supreme confidence into a shaking, raw bundle of nerves, is hardly going to help. They don't think it's a virus, the Man tells me. They're not sure if it's the kid, being scared. We're giving it some time - and he told the doc that french fries might help. She laughed.

10.01 am: Daddy asks: is it possible that the milk would go down better with chocolate? Jing jing! Oh, yeah! ....so far, so good. The Grandmere, sweeping the Toddles off to play in water, pauses mid-sweep to admire the allergy team's consideration of the psych angles. I admire the determination of the chocolate-allergic dad. And yes. Maybe, we hope, it will be better with chocolate. Two doses down, one to go. The second dose - the one with chocolate - went down fine.

10.12 am: The Man calls. The third dose of boiled milk was also chocolate, and he's complaining of the scratchy throat again. We both take a moment to sigh, silently. But he managed the second one okay? Intriguing, no?

I'm getting the hierarchy here: good news = text message, wry news = text message, be on alert news = text message, bad news = phone call. Dose three (of three) is happening now, but a strong waft of anti-climax is in the air. Basin? Is that all? Pretty wimpy reaction, if you ask me. Scratchy throat - but not painful, tight, or closing? I'm caught, pulled between a sense of fierce, stubborn progress, nails dug in, holding on to some sense of perspective - and the internal toddler, jumping up and down and screeching gimme ice cream!

10.20 am: game over. The second dose was soy milk, the Man told me. And they want us to continue the protocol. I groan. The Eldest was so seriously, completely done with the muffin-per-day, he was moaning and wailing over the four-rice puddings-per-week, and willing to be brave about the pizza. Shit shit shit shit shit shit shit.

And persuading him to keep on for another six months, when he's failed the milk challenge once? Not friggin' likely.

Oh, arrgh. Hope, she be a bitch.

11.08 am: the SIL calls - do I need anything? YES. I need something to make this better. Lessee.....I have a box of Honeypot Ginger Cookie mix, and maybe we can have a Who Needs That Dairy Stuff celebration dinner? She nods, and picks up berries, popsicles and general sympathy. Plan in place, I think I can go take a shower now. Brush my teeth, maybe?

Time to admit that I can't hide in the frozen, poised for something to happen moment of waiting, and shoulder my way into the realities of the day. No dairy. Some dairy. More than we had six months ago, more than we thought possible ten months ago.

So. Here we go again.

plundering buckets

Of course, there's a story - but most of it is in the letter I carefully didn't write, so I think you're probably up to speed. Fill in my face, trying for calm, reminding myself that if I listen, he will talk, and if I shriek, he'll stop.

(Listen, woman, listen. Oh. And try not to laugh out loud, 'k? Because damn, when my kid decides to get himself tossed out of class, he does some very fine work.)

So, I listened. And I asked him about the teacher's response, looking to see if she gave him warnings (she did), used teamwork to help him change course (yep), and how quickly her head started revolving on her shoulders (inexplicably: didn't). Oh, and how much of each happened before the kid ended up a. in a quiet corner before being b. tossed out and c. talking to the head of the lower school.

Who, to her credit, responded by beginning a revamp of the class that the kid despises. Which I find kind of staggering, and more evidence that the kid is luckier than he knows: I was all in favor of a revamp of the kid. Possibly involving a welder, definitely with some wicked wrench work. Because here's the thing: insofar as I can see, every kid has a quota of Crap You Can Pull, which is dipped out of their Effort You Can Require of the School bucket. And I'm worried about his.

This isn't a question of being a class PIA, it's a question of needs. And this isn't just a question of going to a private (read: teeny religious) school rather than a public one, it's a practical matter. If you have a kid in your class who needs, needs, needs and then some, at some point when you look at that kid, you are going to feel pre-steamrollered. Teachers can give, and the good ones give a hell of a lot. But kids need to give back, too, refilling the bucket - or things can get strained. And strained means that there's less resources left, should you need more, simply because you are dealing with human beings. A long list of needs means that there's less left for that individual to give, because again, you are dealing with human beings.

As I might possibly have cause to know, human beings get tired. Possibly, if you are a mama, that's when you hear that vicious little snap! and begin roaring with all the love that you can muster in the midst of end-of-ropeness. There's a reason why the Short Bus parents talk so much about being tired. But I think about managing 24 kids, their needs and habits and personalities....and shudder. Because to each of their parents, every one of the 24 isn't kid, but rather Kid. And we expect the teachers to think so, too. At the Eldest's little school, we are certain that the teacher must think so. Thus: tired.

We've worked hard to expand the Eldest's EYCRS limits, mostly by being nice people and the best teammates we know how. And we try to refill that bucket by telling his teachers how much we appreciate them, and yes, I'll admit it, by making our by-now famous cookies. (At the Big Meeting before school started, the head of the lower school asked me for the recipe...having been given a tin of these the previous winter. Who knew?) I communicate whatever I can, as best I can, and do a careful if slightly desperate dance between working on the Eldest's interests and maintaining relationships. I actually like the people I'm working with, but it adds an odd flavor to really need them to like me back. In a public school, maybe I could afford to be more of a bitch, or maybe to do less baking. Have fewer meetings.

Maybe not. Because at the end of the day, there's still that bucket, limited in size by the humans toting it around.

So, here's the deal: the Eldest uses EYCRS resources by needing a little extra watchfulness, for his hemophilia. He uses a lot more for his food allergies, which slide themselves into class trips, the Head of the School's beloved squash project, Thanksgiving celebrations, and oh, just about anything Israeli/Jewish and involving food. (Ah, tahini. We meet again.) And he requires more because he tends to feel awkward in social settings, and his response to this is clowning around. Which is lovely in a classroom, dontcha think?

(more on the social thing in another post, but the short version is, unexpectedly: shy)

And oh yes, he uses more EYCRS because he's smart. Not the next Einstein, no, but can do sixth grade math smart (if I explain - okay, look up online - words like "mass," and "factors" to him). It sucks right now that the math problems that he's getting are chock-full of vocabulary that he doesn't understand, or skills that he doesn't have - like drawing a family tree - and so he gets stumped. And frustrated, knowing that part of the problem is something he could do, if he could only reach it. Does his brain fire like that in other areas? I'm not sure. But the kid drew Moh's scale of hardness for me the other day, explained it, and I thought that was pretty flaming awesome.

But hey, I'm his mom.

He's got buds in this wierd, fiery learning thing - a classroom of them, all delighted to learn and alarmingly good at it, in their various ways - and they egg each other on. The school, we're told, is both stunned and tickled. And they're throwing resources at the kids, but still, there am I, asking them to adjust to my kid's quirky levels (because there's never just one level for a kid, they vary by subject, y'know? untidy, that), and drawing on the EYCRS. Because heaven help us all if he gets bored. Trust me on this one.

So when it comes down to it, kiddo me love, you've got too much going on to be pulling more out of the bucket. It's unfair, but that's just how it goes. Can you talk to us, work with us rather than getting wired up and achieving new heights of grinning, PIA kid-ness? We-ell, maybe. The Eldest is blessed with two teachers of an admirable degree of probity and sense of humor, one of whom is openly fond of him. And who tossed him out into the hall. I asked him, she said on Friday, if he could work with me, so that he could make a good choice. I explained that he was not making good choices, she said, and sighed. I dropped my head into my hands. Not again.

I know the answer to the teacher's question: I'm sorry, the Eldest told me recently, but I really just can't. I looked at his earnest face, had seen his efforts to work with me on a calming technique, and I knew he was telling the truth. And it hurt to watch him run out into the hall, jumping and twisting so that his body bounced off the wall, mid-air, land and run on.

He can't help it. We've done testing (more on that later, too), and we know that sometimes, he really can't. Still, the kiddo wants to please the adults, he wants to do right, but it feels good to be ramped up, he told me. And he can't - yet - ramp down without my help, and he certainly doesn't understand why he has to. And I know absolutely and with a fierce pleasure, that the bucket doesn't mean crap-all to him.

And honestly, it shouldn't.

But the Toddles was happy: part 4

When I was in high school, I took the subway to school every day - a roughly 45 minute trip. These were the days of Bernie Goetz when you didn't look anyone in the eye, and worked to maintain an apparent lack of awareness of your fellow subway riders, while avoiding elbowing one of them in the shoulder holster. You were, however, permitted to subtly read their newspapers, so long as you remained sufficiently aloof while doing so.

Riding the subway opened up a world of journalism to me - my family got the New York Times, but the New York Post, the New York Daily News, the New York Observer rustled around me, and had (gasp) funny colorful bits, like comics and horoscopes. But those, saith the paterfamilias, were candy for the brain. Real news was serious stuff.

(note: unlike this blog)

Nowadays we get a newspaper that is - almost - serious. And it has the funny pages, complete with horoscopes. And oh, but had I been better at ignoring my father, on December 17th I would have read my horoscope. And stayed home.

You appear to have everything under control but someone you know will give you a difficult time, regardless of your well-thought-out plans. Follow your heart and stick to your game plan.
- 12/4/2008 Boston Globe

Um. Hm. (shrug) Nah.

Our bags stuffed with paper - printed emails, prioritized lists of issues to discuss, talking points, resource sheets, documents of various sizes, tones and degrees of authority, the Man and I deposited the Toddles with a friend, and trudged off to the preschool. We were prepared. We'd done drills the night before, planning what we'd say if this, if that. We had it, well, well-thought-out.

The parking lot was cold, and our feet slid on the ice. Deep breath, I told my love. Here we go.

We were meant to meet with the director of the Toddles' preschool, and meeting set up months ago, after an irritated director suggested that perhaps I could be more reasonable than ask questions about ingredients. I see (I paused from typing to unclench my jaw) we share different views on food allergy, both in and outside of the classroom. I look forward to learning more about your approach. And I set up a meeting, to prove the point.

One pounding headache later, I was less certain that there was a point worth proving. I spent a week wandering around looking like a kicked puppy. Shocked, silenced, flabbergasted, I stared at the walls as if there was an answer written there somewhere. Slowly, slowly I began to realize how lucky we've been in our schools, how little I have had to do with our success, and how much it has rested, instead, on the shoulders of the educators who have chosen to work with us.

One after the other, doctors, teachers, administrators, friends, resource people at FAAN, Board of Jewish Ed, even legal friends weighed in. Yes, we ask for much more than the average allergic child needs. No, it's not unreasonable, our measures are necessary. Yes, this happens to other families. Yes, this particularly happens to families at schools with allergy experience, said the folks at FAAN, it's the unfortunate result of a school knowing enough to assume that they don't need to know more. I made call after call, looking for failures in my methodology, places where I might be overreacting, allergy management measures that might be unenecessary. Meanwhile, the director had a similar list of resources, but her phone was silent.

I'm stuck, I whispered. Stuck. I hate stuck, hate helpless, always always looking to use my absurd energy to keep going, to hunt down a solution. But stuck. And stumped: if I am making the right requests, if these requests are reasonable - and possibly manageable - then what do I do now? A local advocate, specializing in schools and allergies, sighed. There may be nothing you can do, she explained. If trust has broken down - trust in you, your trust in them - and defensiveness has set in, there may be nothing to be done. I hated her truth, even as I agreed with it. But.

But, I'm stubborn. But, I needed to try. But, I couldn't bear the idea of failing because of communication. But, can I go to school today? the Toddles would ask, and reach for his backpack. My heart twisted inside me, at his confusion, at his pretend play with his friends, listening to him tell the story of his day at dinnertime, describing school activities and even conversations with his classmates. Watching him, it hurt surprisingly. It still does.

oh, my little love, who is so delighted to find a world of friends outside of our little allergy bubble. I owed him the best my stubbornness can bring, the best 'but' I can find to keep us moving, keep us trying to make this work.

A meeting with a thoughtful, lovely rabbinic sort offered some hope for movement forwards. Listening to her, I could see that she cared very much about the school, the community centered on the synagogue, and she was practical enough to see options for working with the various personalities involved - mine, perhaps, included. She'd talk to the director, see what could be done.

Twelve minutes before shabbat, she called - the director has been working hard, harder that I've ever seen her work for another child, said the rabbi, and she would like to meet with you. I was nervous, uneasy to hear unqualified approval of the director's efforts in the rabbi's voice. But. Really? That's wonderful. Over the phone, the rabbi nodded. And emphasized: hard work, never seen the school do so much for a child, really willing to work with you to sort this out. Eight minutes until candlelighting and one recipe to go, I said a sincere thank you and ran for the frying pan.

Oh, yes, said the director cheerily, when I called to confirm the old meeting slot for the new purpose. And we'll talk about the list we made at the last meeting, of who is responsible for what. I nodded, smiled, and then - wait. What list? Can I have a copy of this list? I emailed, we'd like to review it before the meeting. The screen blinked. See you then, the director confirmed. But wherefore the list? I had a stack of crucial papers to bring to this meeting (you'll never know what you end up needing, saith the Man, and I piled them high), but none of them was a list. List? No, I realized - not list. Agenda. Power play. Oh, shit. Here we go again.

I sat down on the floor, breathing hard. Get a grip, woman, I told myself, but the rant bodychecked me into the boards, and took off. No. it said, I can't let this happen. I've spent weeks feeling like a half-assed idiot for not getting things in writing before school started, for not having clamped down harder on details, for not having been ruthless about getting information, for being too nice to really lay down the law. Especially when I already feel like I've failed the Toddles, and I cannot do that.

This is our chance to sort this out, I told the gouge in the floorboard. Make or break time. Got to get it right. And she's playing games?

I was scared, gasping. Staying or leaving the school meant less, now, than doing right by the Toddles, doing my best and walking away proud. I had failed him, I knew, by not being able to shake off the shock of our last meeting. Bullet points danced in front of me, itemized each place where I could have intervened, been polite but firm and effective. Red paint, diaper wipes, getting the damned IHP signed, the list went relentlessly on. I stared at it, through it to the wall, and breathed. In, out. In, out. Did, did not. Should, did not. Must, will do.

No worries, said the Man. We'll get there early and ask to read it then.

We did. And she didn't give us the papers, prevaricating absurdly until the synagogue president walked up behind her. With two, three smooth sentences he procured the document, handed it to us, exiled the director from her office, and gave us time to read.

We read.

We took notes.

We looked at each other.

The document was a food allergy management plan, a revised version of two different documents I'd been shown a couple of weeks before. I smiled to see the format redesigned around the FAAN food allergy management plan's division of responsibilities. And I frowned to see that, once again, the director had considered and resolved the Toddles' needs - without talking to us. Pique? Real problem? I shoved my reaction aside and kept reading.

And stopped. Attached to the document was a waiver. In signing the waiver, we would agree to the terms of the food allergy management plan and waive, hold harmless, indemnify, do the dishes for anyone associated with the school or synagogue, should something happen to the Toddles. We can't sign this, I whispered to the Man. We need someone to read it for us, first. Make sure it's okay. He looked puzzled. What, I hissed, do you think that this is sufficient?

The Man looked at his list of notes, a string of allergy management measures missing, insufficient, or inexplicable. No, he shook his head. The plan was little better than it had been before the Toddles' second reaction. It addresses none of the major issues we've identified, he pointed out. Communication, especially, isn't covered, and - he stopped, surprised - just look at this! We looked at this, that, and seven varied others. Oh, no.

The director returned, sat, and the synagogue president perched on a chair. He was there as a mediator, I found out later, but it was a role hard to pick out - he began with the usual sympathy, "can't imagine how you do it, stress, must be hard," and moved right on to review his concerns with liability. The director nodded, explaining how synagogue board members had protested the Toddles' admission to the school, worried about liability. She'd fought for him, we were told, she stood firm: he had a right to a Jewish education, like any other child. Director the hero, we saw, caring but concerned president. If we let them keep those roles, the meeting could go well. But there was this, that and the list of others, and they loomed larger than any role. Inevitably, the negotiations began.

The president left almost immediately (got another meeting, sorry), and we sat looking at the director. What about this? No, not going to guarantee that. What about that? No, don't want to be contractually obligated to do this. What about follow-up meetings after an allergic event? The director smiled. We do what we are required to do for our licensure, and we'll follow these documentation procedures, she pointed out, smilingly squashing our suggestions. She paused, remembering those regulations and backed up slightly. But of course, if you want to meet, I'm always available to you.... Watching her relaxed, confident posture, we trudged on. This is a "cannot," but we've never asked you to do that - does it need to be here? Yes. What about this "cannot" - there's a measure already in place for it? I don't want my teachers to feel like they are under scrutiny, obligated to be 100% reliable. Mistakes happen, you know. We nodded. And yet, if this is a contract, shouldn't it be complete? The director shrugged. There are things that we will do as a matter of course, that don't need to be here. We could do this, or that, but I don't want them included here, don't want the contractual obligation. I stared at her blankly. is this a contract or isn't it? Why would we sign something that is missing a measure that we agree upon? How could we?

And - faltering now - how could that be asked of us? Or, perhaps, I admitted, I should be asking why. Why are we being asked to sign a non-negotiable, incomplete contract?

We tried again, and again. We understand that you cannot control the condition of a child or visitor entering the classroom, but there's a sign on the door already about using the diaper wipes we've provided. It's a simple, effective measure, and I think we should keep that. The director looked at us calmly. No sign, she informed us. I don't like the environment that sign would cause. I gaped.

what's not to like? awareness of the issue? awareness of the school's committment to meeting the individual child's special needs? of being like other schools who use this measure? what the fucking hell could she possibly be objecting to?

Slowly, I realized. The environment was us. Our presence - not necessarily the Toddles', but his parents, demanding to be part of the team making choices and meeting the challenges of his care. Left to herself, the director would have been the hero, the climber of mountains who made it possible for our sweet, funny loving boy to be in a classroom of delighted peers. But we pushed in, muddying her super hero spandex, diluting the image. She retaliated, refusing to agree to things that her teachers were already doing, refusing to allow the parents and community to continue to support us as they had begun to do, refusing to negotiate.

*game over*

I looked at the Man. We had rehearsed this: if the situation was untenable, he was the one who would say so, and explain our request for a pro-rated refund of the tuition. As the man, he had an irritating degree of authority in this situation, and it was his job to speak up here. I looked at him, waiting. He looked back. I asked him his opinion. He prevaricated. I narrowed my eyes, he looked surprised. Finally, I said that we'd have to show the waiver to a lawyer friend, and hustled us out.

Slipping on the ice, I grabbed his arm. Should we go back and tell her we're done? Ask for that refund? He looked surprised. Why? If she's willing to do what we need, even if it's not on the contract, then isn't that okay? I sucked in air. Would you trust her? Are you comfortable that she wrote a plan without feeling a need for our input? She doesn't want to talk to us. I watched him, seeing the same absurd, fading hope that somehow this could work, somehow the Toddles could be happy here, could be safe. Slowly, reluctantly, the Man nodded. We didn't send the Eldest to a grade school for that reason alone, he remembered. Okay. We're done.

And we were.

I wrote, rewrote and hated a formal letter, reviewing our experience and our request for a pro-rated refund. I held the letter, scared to send it, frightened of the firm criticism in it, wriggling to avoid sending it. But I couldn't avoid that - and I definitely couldn't avoid telling the boys.

I'm sorry, love, I told the Toddles, with the Eldest listening worriedly. We've been talking to your school, and trying to help them be teammates with us, to keep you safe from the food allergies. The Toddles nodded. Teamwork is important, right? The Toddles grinned and told me that indeed, it was. But part of teamwork is listening to each other, and working together. And it's not always easy to listen to each other, is it? The boys shook their heads, the Eldest looking rueful. Sometimes, everyone has their own ideas and wants to do things their way. But is that teamwork? The Eldest shook his head, firmly. It's not, he told me. That's just a mess!

I took a deep breath.

I'm sorry, love, I told the Toddles. We couldn't get teamwork going with your preschool, and without that teamwork, you just aren't safe. And I love your preschool, and you love your preschool, but there is just nothing more important than keeping my boys safe. So, we're not going to be able to send you to this preschool any more. The Toddles' eyes grew round, sad, and I rushed on. But your friends will still be your friends - just not at school. We can have playdates, I suggested, watching the Toddles' face relax. And we'll work on finding another school. And shall I ask QG if she can come and play?

The Toddles lit up. I can have playdates? And QG will come and play with me? That would be great! he shouted. And off he bounced.

But the Eldest still stood, worried. Why didn't this work, he asked. Did the teachers try to be teammates with you? I hugged him. Yes, they did. But the director didn't want to have us on the team, I think, and that ended that. The Eldest hunched his shoulders, angry now.

She should go home to her wife or husband or partner, he exploded, and we could have a replacement. Someone who listens! Does she believe in Judaism? is she Jewish? I nodded. Then she should be polite! use derech eretz* - she's being disrespectful.

I hugged him. So, what do you think we should do, if the person in charge is making a mistake and won't listen to us? The Eldest barely blinked. You should bring everyone to talk to her. I'd bring all of my 22 classmates, and we'd point 44 eyes at her. No. 46 eyes. That would do it.

I hugged him again, my treasure, my seeker of solutions. Thank you, love. And off he went, certainty coloring his steps, the gift of caring educators, friends, community. And there I was, infected with the same certainty. Somewhere, we'd find that for the Toddles.

But first, we went back. This is a gift for your teachers, I told the Toddles, to say thank you and happy Chanuka. They worked very hard, so let's make sure they see that we appreciate their work, okay? Bouncing, delighted, the Toddles gave his teachers our homemade granola bars, opened the pretty red tins he'd chosen, explained the ingredients. Thank you, he told them, and they hugged him. Thank you, I told them, and they hugged me. And we said good-bye.

That was good, the Toddles told me. Yes, I agreed.

I held his hand as we walked out the door.

***************************************
Thanks to the Teachers, or Chocolate Chip Cranberry Granola bars
(adapted from Living Without, Fall 2006)

1/2 c. margarine, melted (I use Willow Run or Fleishmann's Unsalted)
1/2 c. vegetable oil (I used canola here)
3/4 c. brown sugar
1/2 c sugar
2 Tb maple syrup
2 c. oats (I use Quaker Old Fashioned, which my allergist says is the only safe Quaker variety to use with wheat/rye/barley/spelt allergies)
.5 c ground oats (take Quaker Old Fashioned oats, drop into food processor, hit button, measure out .5 c)
1.5 c puffed rice (Rice Twice cereal, by Erewhon)
1 c shredded coconut (I used unsweetened, because dang, there's already a ton of sugar here!)
3/4 c chocolate chips (I used Enjoy Life)
1 c. dried cranberries (I used Trader Joes, because I love their allergy labelling..)

Mix together. Heat oven to 350 F, line cookie sheet with parchment paper. Press mixture firmly into the parchment paper - it should cover the whole cookie sheet. Bake 30 minutes, and barely let it cool before cutting (carefully) into bars.
******************************
* derech eretz is defined (loosely) here.

Backtracking? Here's part 1, part 2, and part 3 of the story.

going shopping - and checking tags

The Man and I have been reading and rereading labels, and still, the number of items we returned this week was ridiculous. We returned:

• vanilla Soy Dream (should have been 'original' flavor)
• flaxseed with blueberries (Trader Joes, had "natural flavors")
• Galil sun dried tomatoes in oil (contains "spices")
• 365 organic diced tomatoes (no kosher symbol - the conventional 365 tinned tomatoes are hechshered)

and oh, embarrassingly more.

For years after we had children, grocery shopping was almost leisurely. We'd do some aisles together, some separately - I liked to do produce, the Man likes to do anything "time efficient." (a concept I still don't quite grasp) But now, with at least one if not two kids in the cart and one adult herding them along, we move at top speed.

The rule for allergy shopping is simple: even if you've bought it a squidrillion times before, always read the label. Buying two of the same item? Read both labels. The acronism is REAL: Read Each And Every Label. But for us, that's a goal - not a reality. (ahem)

So, we try to read each and every label in the store, and then it gets reread at home, as we unpack the groceries. Unless it's dinnertime, in which case we might miss some. And I try to recheck items when I pull them out of the pantry. And thank heavens, because somehow we need all three checkpoints. Labels change so quickly, making the oft-requested "safe snack" list an infuriating hazard. Nice parent/teacher/friend, wants to feed my kids things that won't make them turn blue. This is wonderful! This is something we should support! This is going to be a headache!

I was once collared by a righteously infuriated friend for exactly this reason, and yes, she was right. But what are the options? One is for me to always provide the snacks. Another, is for me to provide a list of snacks, plus their ingredients and any warning labels - these are kosher only if identical to the item in the store. A third is for me to ask people to call me from the store, and read the labels to me - each and every time. How big of a pain in the ass can this possibly be? To reduce the PIA, I should be able to offer autonomy to the people willing to take on food allergy friendliness. To ensure safety, I can't - quite. My compromise is to offer the list, check the labels, and stash food in the car, just in case.

Even when we all get it right, the manufacturers present one last wild card. The Chicago Tribune offers a database of products recalled for undisclosed food allergens. They track(ed) the top 8 allergens, plus sesame, sulfites and Yellow #5. The database was built using reports from the FDA, USDA, NY State Department of Agriculture and Markets (one of the few to test imported foods).

A great big splashy, flashy caveat emptor hangs here: the Tribune notes that only 7% of consumer reported allergic reactions lead to a recall of the food. Assuming that some percentage of reported reactions are incorrectly attributed, or crank responses, that's still a remarkably low number. In one case, a complaint was lodged regarding a dairy allergic child's reaction to a Duncan Heins cake mix. You can see here why the product wasn't recalled for some time:

"When asked by the Tribune why the recall took so long, Pinnacle Foods said it immediately had the product tested but found no milk. A few month later, the company received a second complaint of an allergic reaction to the mix. Pinnacle said it again investigated, this time finding a likely culprit overlooked in the first inquiry: some chocolate chips."see rest of text here

Here's what gave me pause:

"The Tribune investigation found that 187 companies since 1998 have had more than one recall for hidden allergens. ... According to the Tribune investigation, half of all recalls for hidden allergens involve undeclared milk or egg. ... The Tribune investigation found that on average, five products are recalled each week for undeclared allergens. ...one-third of all food recalled for hidden allergens involves cookies, candy, ice cream or snacks."

sigh.

The full article is here but I think the lesson is simple: call the company yourself and ask, always. And avoid companies with bad track records, either in reviewing ingredients and cross-contamination information with you, or with recalls. When Silk had their recall for dairy contamination, I called the company and asked for updates. They were unable to tell me either where the dairy had come from, nor demonstrate a level of response that reassured me. Therefore, we avoid Silk products until our allergy nutritionist tells us otherwise.

And in general, we look for companies that have strong allergy labelling practices where cross-contamination labelling is concerned. A serious hat tip to the Nut-Free Mom, who points out that imported foods are even more problematic. They may not have reliable allergy labelling, and outside of New York, there isn't an agency that tests imports.

My many one-sided conversations with Israeli manufacturers have, alas, taught me this. But I heartily recommend Manishewitz, as a company who has at least one educated grandmother of a food allergic child...answering the customer service line. After an infuriating 45 minutes talking to someone at Osem, I called Manishewitz and braced myself. This grandmother lectured me on remembering to ask about cross-contamination, and I cheered.

******************************************

I bin tagged!

So, since I think I did the 7 facts meme before - no, wait, that was a tag from the evidently patient Aidel Maidel. I'll go finish that, shall I? Meanwhile, here's my nearest book, opened to page 56, and sentences 2-5 are:

"This book has everything I love: early instrumentation, natural history, art..."

"But have you been thinking about what we discussed?" Sandy asked.

"Daddy," she said. "You may have noticed by now - I don't want to be a doctor."

-Intuition, by Allegra Goodman

(an excellent book, by the way, and I'm not just saying that because her son makes a brisket worth schlepping for.)